Monday, January 27, 2014

The lupus interview question of the year

"What does it feel like?"

This was the question posed to me during a phone interview I did recently for a lupus research group. We'd been talking for close to an hour, and most of the questions up to that point had been fairly routine. When was I diagnosed? What were the symptoms? What is my current treatment? And on from there. But then, this question popped up, and it gave me pause.

"What does it feel like...when you've just come out of a flare? When you wake up one morning, and for the first time, you feel symptom-free. After weeks or months of feeling crummy, what does it feel like when those symptoms finally subside?"

What. A. Fabulous. Question.

Because the feeling, for me, is almost indescribable. It can be one of the most exhilarating feelings in the world, and every time I've experienced it, the sense of relief I feel is exponentially greater than the last. It's as if the world starts spinning again. I almost feel free, as if I'm no longer trapped or stuck in something constrictive. Within moments of realizing my symptoms have subsided, I immediately feel inspired and hopeful - feeling as if this is my chance to start again. To begin rebuilding. To finally get on with living.

Now - before I get too carried away, I'm going to admit that in the old days, I misinterpreted this surge of inspiration. The moment I realized that my symptoms had faded into the background, I took it as a sign that I had been officially recharged, 100% full. And the goal was then to exhaust that battery as quickly as possible. Or so you'd think. I would run as many errands as I could fit in, and work as long as I could handle. I wanted to maximize the time I had without pain, because you never knew when it is coming back. Yes - in my early years with lupus, I viewed the end of a flare as a ticket to Busytown...where I should move at lightening speed to make up for the time I'd been down. The energy I put toward re-establishing my ground was frenetic...and if I had stepped back from my rampage, I probably could have seen how uncomfortable a pace I was keeping. But back then, I didn't understand the cumulative affects of lupus. I didn't grasp the chronic side of the disease. And I didn't know how to give the illness the respect it deserved.

But fast forward to today. I'm not 100% cured, but I certainly don't view symptom-reprieve as a shotgun at the starting line. I realize that life with lupus is always evolving, and I can't ever forget that however I'm feeling right now might not last forever. So my job is to actually make that symptom-reprieve last as long as I can, by easing back into activity, taking it slow, and minding my boundaries. If I remain calm, the disease will remain calm. If I ever so gently test my limits, with the ability to pull back if necessary, I can usually get away with a whole lot more activity than if I'd approached it like I did years ago.

So when the interviewer asked me that question - I paused. I thought back to the last time I'd experienced that sense of relief, just a few weeks prior. I remember that morning weeks ago, waking up, stretching my fingers, and feeling absolutely no swelling or joint pain. I recall breathing so deeply that my body actually lifted off the bed. And with a big smile across my face, I propped myself up on my elbows (because they didn't hurt!), and thought about the things I was going to experience that day. Not as in "tackle" or "accomplish", but as in enjoy. What were all the things I was going to find pleasure in doing because I was pain-free? My girls came in shortly after I'd woken up, and I looked at them and thought about all the hand-holding, hair playing, tickle fighting we were going to engage in that day. And I just kept smiling. Because when it doesn't hurt to smile, you can hardly help but do so.

5 comments:

What a beautiful and insightful way to describe the debilitation of being in a flare with the exhilaration of being on the back end of one. The best part of your story is the growth and knowledge you have gained over the years on how to maintain your healthy periods by taking care to pace yourself. Beautifully, wisely written. Thank you!

What a beautiful and insightful way to describe the debilitation of being in a flare with the exhilaration of being on the back end of one. The best part of your story is the growth and knowledge you have gained over the years on how to maintain your healthy periods by taking care to pace yourself. Beautifully, wisely written. Thank you!

Hi Sara, I just found your blog and wanted to reach out in regards to lupus, but couldn't find your contact info. If you could, please email me at mtrucillo(at)recallcenter(dot)com. Thanks and I hope to hear from you soon!

The last paragraph of this has me teary at my desk at work, on flare free days, I feel on top of the world, that moment (as you mentioned) waking up and stretching your fingers and not being in pain, leaning on your elbows. Best feeling ever. I look at this disease as when I am good, I’m good but when I’m bad, I’m bad. Love your blog x

Molly, Karrie and rachel--thanks for commenting! I really appreciate hearing that u know just what I'm talking about. Waking up flare-free is one of the best things going, I think we all agree! Take care!

BUY THE BOOK

Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.